Please see attached revision history document. Please contact NINDSCDE@emmes.com if you require further information or have any questions about the revision history.
Cerebral Palsy CDEs Revision History
The need to develop a common data set of meaningful measurements for Cerebral Palsy (CP) was identified as a priority area of the American Academy of Cerebral Palsy and Developmental Medicine’s (AACPDM) 2013–2017 strategic plan. In 2015, the CP specific Common Data Elements (CDEs) were developed through a partnership between the National Institute of Neurological Disorders and Stroke (NINDS) and the AACPDM. Version 1.0 of the CP CDEs was posted on the CP Data Standards page in 2016.
In 2017, the CP CDE Oversight Committee (OC) was created to periodically review, direct the updating, and advance the development of the CP CDEs. Since 2017, the CP OC has convened regularly to develop CDEs beyond the defined data elements in the CP Version 1.0 domains. In 2018, the CP OC developed and posted the External Devices – CP case report form (CRF) and in 2020 developed the Participant Condition Characteristics CRF.
In 2019 the CP OC convened to review validated instruments in the domain of chronic pain, and research standardized orthopedic surgeries and assessments for new CP CDEs. During this process the CP OC formed two subgroups. The CP Pain subgroup recommended 15 pain instruments to assess chronic pain and the CP Orthopedic Surgery subgroup developed six CRFs and associated CDE data dictionaries for lower extremities.
The CP Pain subgroup reviewed a total of 184 assessments: 22 NINDS CDE CRFs across disorders; 23 NINDS CDEs across disorders related to pain; 101 pain measures from the NIH HEAL Initiative; and 38 from a literature review. These assessments were reviewed using the following criteria to recommend the selected 15 pain instruments:
- Assessment was developed specifically for chronic pain
- Assessment was developed for pediatric populations (children 0 to 18 years)
- Main focus of the assessment is pain
- Assessment fits within one of the pain categories
- intensity, interference, behavior, quality, or location
- Assessment is available in English
The CP Orthopedic Surgery subgroup assessed the Cerebral Palsy Research Network’s (CPRN) Orthopedic Registry Elements to develop CP orthopedic surgery CDEs. The CPRN Orthopedic Registry Elements and Data Forms were chosen as a basis for these CDEs because these elements have been vetted by CPRN’s Orthopedic Registry Task Force of renowned orthopedic surgeons allowing the subgroup to select, organize and augment the registry elements more quickly to develop the NINDS Orthopedic Surgery CDEs.
The CP Pain Instruments and Orthopedic Surgery CRFs and CDE Data Dictionaries were posted on the CP data standards page in August 2022.
A complete listing of the Pain Instruments and Orthopedic Surgery CRFs and CDE data dictionaries may be found in the CP CDEs Revision History document linked above.